A marriage of data and caregivers gives Dr. Atul Gawande hope for health care

How transparency, real-time feedback, and lessons from the police can improve health outcomes.

Dr. Atul GawandeDr. Atul Gawande (@Atul_Gawande) has been a bard in the health care world, straddling medicine, academia and the humanities as a practicing surgeon, medical school professor, best-selling author and staff writer at the New Yorker magazine. His long-form narratives and books have helped illuminate complex systems and wicked problems to a broad audience.

One recent feature that continues to resonate for those who wish to apply data to the public good is Gawande’s New Yorker piece “The Hot Spotters,” where Gawande considered whether health data couldĀ help lower medical costs by giving the neediest patients better care. That story brings home the challenges of providing health care in a city, from cultural change to gathering data to applying it.

This summer, after meeting Gawande at the 2012 Health DataPalooza, I interviewed him about hot spotting, predictive analytics, networked transparency, health data, feedback loops and the problems that technology won’t solve. Our interview, lightly edited for content and clarity, follows.

Given what you’ve learned in Camden, N.J. — the backdrop for your piece on hot spotting — do you feel hot spotting is an effective way for cities and people involved in public health to proceed?

Gawande: The short answer, I think, is “yes.”

Here we have this major problem of both cost and quality — and we have signs that some of the best places that seem to do the best jobs can be among the least expensive. How you become one of those places is a kind of mystery.

It really parallels what happened in the police world. Here is something that we thought was an impossible problem: crime. Who could possibly lower crime? One of the ways we got a handle on it was by directing policing to the places where there was the most crime. It sounds kind of obvious, but it was not apparent that crime is concentrated and that medical costs are concentrated.

The second thing I knew but hadn’t put two and two together about is that the sickest people get the worst care in the system. People with complex illness just don’t fit into 20-minute office visits.

The work in Camden was emblematic of work happening in pockets all around the country where you prioritize. As soon as you look at the system, you see hundreds, thousands of things that don’t work properly in medicine. But when you prioritize by saying, “For the sickest people — the 5% who account for half of the spending — let’s look at what their $100,000 moments are,” you then understand it’s strengthening primary care and it’s the ability to manage chronic illness.

It’s looking at a few acute high-cost, high-failure areas of care, such as how heart attacks and congestive heart failure are managed in the system; looking at how renal disease patients are cared for; or looking at a few things in the commercial population, like back pain, being a huge source of expense. And then also end-of-life care.

With a few projects, it became more apparent to me that you genuinely could transform the system. You could begin to move people from depending on the most expensive places where they get the least care to places where you actually are helping people achieve goals of care in the most humane and least wasteful ways possible.

The data analytics office in New York City is doing fascinating predictive analytics. That approach could have transformative applications in health care, but it’s notable how careful city officials have been about publishing certain aspects of the data. How do you think about the relative risks and rewards here, including balancing social good with the need to protect people’s personal health data?

Gawande: Privacy concerns can sometimes be a barrier, but I haven’t seen it be the major barrier here. There are privacy concerns in the data about households as well in the police data.

The reason it works well for the police is not just because you have a bunch of data geeks who are poking at the data and finding interesting things. It’s because they’re paired with people who are responsible for responding to crime, and above all, reducing crime. The commanders who have the responsibility have a relationship with the people who have the data. They’re looking at their population saying, “What are we doing to make the system better?”

That’s what’s been missing in health care. We have not married the people who have the data with people who feel responsible for achieving better results at lower costs. When you put those people together, they’re usually within a system, and within a system, there is no privacy barrier to being able to look and say, “Here’s what we can be doing in this health system,” because it’s often that particular.

The beautiful aspect of the work in New York is that it’s not at a terribly abstract level. Yes, they’re abstracting the data, but they’re also helping the police understand: “It’s this block that’s the problem. It’s shifted in the last month into this new sector. The pattern of the crime is that it looks more like we have a problem with domestic violence. Here are a few more patterns that might give you a clue about what you can go in and do.” There’s this give and take about what can be produced and achieved.

That, to me, is the gold in the health care world — the ability to peer in and say: “Here are your most expensive patients and your sickest patients. You didn’t know it, but here, there’s an alcohol and drug addiction issue. These folks are having car accidents and major trauma and turning up in the emergency rooms and then being admitted with $12,000 injuries.”

That’s a system that could be improved and, lo and behold, there’s an intervention here that’s worked before to slot these folks into treatment programs, which by and large, we don’t do at all.

That sense of using the data to help you solve problems requires two things. It requires data geeks and it requires the people in a system who feel responsible, the way that Bill Bratton made commanders feel responsible in the New York police system for the rate of crime. We haven’t had physicians who felt that they were responsible for 10,000 ICU patients and how well they do on everything from the cost to how long they spend in the ICU.

Health data is creating opportunities for more transparency into outcomes, treatments and performance. As a practicing physician, do you welcome the additional scrutiny that such collective intelligence provides, or does it concern you?

Gawande: I think that transparency of our data is crucial. I’m not sure that I’m with the majority of my colleagues on this. The concerns are that the data can be inaccurate, that you can overestimate or underestimate the sickness of the people coming in to see you, and that my patients aren’t like your patients.

That said, I have no idea who gets better results at the kinds of operations I do and who doesn’t. I do know who has high reputations and who has low reputations, but it doesn’t necessarily correspond to the kinds of results they get. As long as we are not willing to open up data to let people see what the results are, we will never actually learn.

The experience of what happens in fields where the data is open is that it’s the practitioners themselves that use it. I’ll give a couple of examples. Mortality for childbirth in hospitals has been available for a century. It’s been public information, and the practitioners in that field have used that data to drive the death rates for infants and mothers down from the biggest killer in people’s lives for women of childbearing age and for newborns into a rarity.

Another field that has been able to do this is cystic fibrosis. They had data for 40 years on the performance of the centers around the country that take care of kids with cystic fibrosis. They shared the data privately. They did not tell centers how the other centers were doing. They just told you where you stood relative to everybody else and they didn’t make that information public. About four or five years ago, they began making that information public. It’s now available on the Internet. You can see the rating of every center in the country for cystic fibrosis.

Several of the centers had said, “We’re going to pull out because this isn’t fair.” Nobody ended up pulling out. They did not lose patients in hoards and go bankrupt unfairly. They were able to see from one another who was doing well and then go visit and learn from one and other.

I can’t tell you how fundamental this is. There needs to be transparency about our costs and transparency about the kinds of results. It’s murky data. It’s full of lots of caveats. And yes, there will be the occasional journalist who will use it incorrectly. People will misinterpret the data. But the broad result, the net result of having it out there, is so much better for everybody involved that it far outweighs the value of closing it up.

U.S. officials are trying to apply health data to improve outcomes, reduce costs and stimulate economic activity. As you look at the successes and failures of these sorts of health data initiatives, what do you think is working and why?

Gawande: I get to watch from the sidelines, and I was lucky to participate in Datapalooza this year. I mostly see that it seems to be following a mode that’s worked in many other fields, which is that there’s a fundamental role for government to be able to make data available.

When you work in complex systems that involve multiple people who have to, in health care, deal with patients at different points in time, no one sees the net result. So, no one has any idea of what the actual experience is for patients. The open data initiative, I think, has innovative people grabbing the data and showing what you can do with it.

Connecting the data to the physical world is where the cool stuff starts to happen. What are the kinds of costs to run the system? How do I get people to the right place at the right time? I think we’re still in primitive days, but we’re only two or three years into starting to make something more than just data on bills available in the system. Even that wasn’t widely available — and it usually was old data and not very relevant to this moment in time.

My concern all along is that data needs to be meaningful to both the patient and the clinician. It needs to be able to connect the abstract world of data to the physical world of what really happens, which means it has to be timely data. A six-month turnaround on data is not great. Part of what has made Wal-Mart powerful, for example, is they took retail operations from checking their inventory once a month to checking it once a week and then once a day and then in real-time, knowing exactly what’s on the shelves and what’s not.

That equivalent is what we’ll have to arrive at if we’re to make our systems work. Timeliness, I think, is one of the under-recognized but fundamentally powerful aspects because we sometimes over prioritize the comprehensiveness of data and then it’s a year old, which doesn’t make it all that useful. Having data that tells you something that happened this week, that’s transformative.

Are you using an iPad at work?

Gawande: I do use the iPad here and there, but it’s not readily part of the way I can manage the clinic. I would have to put in a lot of effort for me to make it actually useful in my clinic.

For example, I need to be able to switch between radiology scans and past records. I predominantly see cancer patients, so they’ll have 40 pages of records that I need to have in front of me, from scans to lab tests to previous notes by other folks.

I haven’t found a better way than paper, honestly. I can flip between screens on my iPad, but it’s too slow and distracting, and it doesn’t let me talk to the patient. It’s fun if I can pull up a screen image of this or that and show it to the patient, but it just isn’t that integrated into practice.

What problems are immune to technological innovation? What will need to be changed by behavior?

Gawande: At some level, we’re trying to define what great care is. Great care means being able to provide optimally knowledgeable care in the right time and the right way for people and not wasting resources.

Some of it’s crucially aided by information technology that connects information to where it needs to be so that good decision-making happens, both by patients and by the clinicians who work with them.

If you’re going to be able to make health care work better, you’ve got to be able to make that system work better for people, more efficiently and less wastefully, less harmfully and with much better teamwork. I think that information technology is a tool in that, but fundamentally you’re talking about making teams that can go from being disconnected cowboys in care to pit crews that actually work together toward solving a problem.

In a football team or a pit crew, technology is really helpful, but it’s only a tiny part of what makes that team great. What makes the team great is that they know what they’re aiming to do, they’re very clear about their goals, and they are able to make sure they execute every basic thing that’s crucial for that success.

What do you worry about in this surge of interest in more data-driven approaches to medicine?

Gawande: I worry the most about a disconnect between the people who have to use the information and technology and tools, and the people who make them. We see this in the consumer world. Fundamentally, there is not a single [health] application that is remotely like my iPod, which is instantly usable. There are a gazillion number of ways in which information would make a huge amount of difference.

That sense of being able to understand the world of the user, the task that’s accomplished and the complexity of what they have to do, and connecting that to the people making the technology — there just aren’t that many lines of marriage. In many of the companies that have some of the dominant systems out there, I don’t see signs that that’s necessarily going to get any better.

If people gain access to better information about the consequences of various choices, will that lead to improved outcomes and quality of life?

Gawande: That’s where the art comes in. There are problems because you lack information, but when you have information like “you shouldn’t drink three cans of Coke a day — you’re going to put on weight,” then having that information is not sufficient for most people.

Understanding what is sufficient to be able to either change the care or change the behaviors that we’re concerned about is the crux of what we’re trying to figure out and discover.

When the information is presented in a really interesting way, people have gradually discovered — for example, having a little ball on your dashboard that tells you when you’re accelerating too fast and burning off extra fuel — how that begins to change the actual behavior of the person in the car.

No amount of presenting the information that you ought to be driving in a more environmentally friendly way ends up changing anything. It turns out that change requires the psychological nuance of presenting the information in a way that provokes the desire to actually do it.

We’re at the very beginning of understanding these things. There’s also the same sorts of issues with clinician behavior — not just information, but how you are able to foster clinicians to actually talk to one another and coordinate when five different people are involved in the care of a patient and they need to get on the same page.

That’s why I’m fascinated by the police work, because you have the data people, but they’re married to commanders who have responsibility and feel responsibility for looking out on their populations and saying, “What do we do to reduce the crime here? Here’s the kind of information that would really help me.” And the data people come back to them and say, “Why don’t you try this? I’ll bet this will help you.”

It’s that give and take that ends up being very powerful.

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